Seriously @wabmester I really appreciate you finding that for me. I just couldn't focus enough to go digging through info to find anything myself. Too stressed wondering about possible kidney problem or who knows what, to even do a decent search!
She said that's the condition the person on the Facebook page mentioned to her but then someone else chimed in insisting that no harm could possibly come from healthy blood sugars and they were being insistent that something must be going on internally with her and that other person shouldn't be telling her it's just water retention. They started arguing, well the one did anyway, and the post died out.
This is going to help me sleep tonight! And I already feel the stress of not knowing what's happening going away. Relived that I know what steps are needed and that it won't take long to resolve.
Thank you, thank you, thank you!

This morning is a lot better than last night. Though the swelling is always lowest right after being in bed all night. She still thinks it's better than other mornings.
What we've done so far is limit fluids, salt and allowing blood sugar to run in high 100's to very low 200's as the goal range. And she's still taking the OTC diuretic.
Her feet feel totally normal this morning. She says she feels sore and bruised in her abdomen but not bloated and swollen. The pain she was having last night is gone.
She talked to her T1D aunt that has been doing well on the pump, and she said that she had swelling like that when her blood sugar first normalized too but it caused worsened retinopathy like the article I linked mentioned as a possible complication. The aunt said the same thing the article did. To let blood sugar go back up slightly, which it already did due to the stress, and bring it back down over the next week, while limiting salt and fluids. Emily has no signs of retinopathy or other damage so far so maybe this won't cause any of those issues then.
Emily feels well enough to go to work today so decided to see the doctor tomorrow morning instead of today to maybe get a better diuretic.

Still doing well today.
She messaged the diabetes educator last night so she got a phone call today.
Educator, Cindy, asked Emily to explain how she was counting carbs. Because she noticed she had 3 for breakfast, 4 for lunch and 8 for dinner. She thought she was counting each 1 as a 15 carb item. When she found out that it's total grams, she started in again about how she can't eat like that, and why wasn't she eating any snacks. Went on a whole rant about how eating snacks is important to prevent lows.
Now... Mind you, she can see exactly what the blood sugar readings are, and there were no lows.
Emily said that she wasn't hungry and would rather reduce insulin to prevent lows, as she had done, than to eat simply to feed the insulin.
So in the message Emily told her that she was retaining extreme amounts of water and it equates to 20 pounds in 3 days. Cindy immediately said that weight gain isn't an issue she should be worried about. Only blood sugar control. So Emily explained that she had figured out that the swelling is insulin oedema and that it's caused by bringing blood sugar down too fast so she was trying to stay around 180 today and will bring it back down more slowly over the next couple days. Cindy asked who directed her to allow high blood sugars and tried to tell her that "a little water retention" isn't a big deal and she had never heard of any such condition. She mentioned that Emily has an appointment coming up soon with the Endo and asked if she would just like the doctor to take over all her education then.
She doesn't listen and now doesn't want to even deal with my daughter. Emily said no that she would like to continue. She told me that she wants to teach this lady a few things. Lol
So now she's on a mission to prove that low carb is a great option for T1D's

I thought I would give an update on how Emily is doing.
Went to GP after my last update and I initially didn't say that we thought we knew what the issue was. But he was unsure so then I offered that we had some ideas and showed him the info I found from @wabmester provided link and others it lead me to.
The doctor reacted very positively to it and agreed that it seemed a perfect explanation upon looking into his own references as well. He had never heard of it before and thought the Endo might be better to handle it, but past times she mentioned much lesser swelling at Endo office, they said it was something for a GP... Whatevs...
Anyway, he started her on the RX diuretic but within a day she knew it wasn't helping since he said to expect to make frequent bathroom runs and it had not seemed to increase at all. He doubled the dose and she noticed a slight increase urination, but it hasn't reduced the water enough to show any progress by weight yet. And the swelling still seems to fluctuate from very much to extreme to occasionally waking up and enjoying 30 minutes of somewhat low levels before it comes right back.
Blood work all looks good and shows no sign of liver or kidney issues. Sodium and potassium levels were perfect too.
She went to Endo yesterday and she seemed familiar with it but wasn't concerned upon viewing the recent blood work. She just said it will pass and wants to change her back to Apidra instead of the Novolog that insurance forced her to start using because of coverage. So if that helps, I'll have to fight insurance for coverage. Yay. The edema has caused some neuropathy in one of her feet but doctor thinks it will go away once the swelling does.
As far as her low carbing, she's doing pretty well. She occasionally has to consume something carby to bring blood sugar up and I think it's preventing ketosis. So she's making more adjustments to basal insulin to prevent that better. The Endo raised an eyebrow when she learned about the plan but Emily just said that she feels better eating this way and she's not trying to eat less food, just less carbs. Doctor just said "okay then". Slightly disapproving, but accepting... She didn't give her any stupid "warnings".
Her A1C went from an unmeasurable >14 (so who knows what it really is since the chart stops there) to 9.5 in just a couple weeks. That 9.5 is still factoring about 3 months so for it to come down that much in such a short time of low carb and pump therapy, I think she must have been in normal, non-diabetic range quite a lot! It wasn't due to a lot of lows either. There have only been less than 5 actual lows but she has been keeping bg around 150 to try to help the edema and bring bg down slower over a months time. So if she goes below 120, she watches it and eats some carbs if it starts to go under 100. The Endo agreed that was a good idea for now.
The best news is that she is achieving hunger control improvement, though I know it will get better once this stage passes and bg can actually be maintained in normal range without these complications.
She's using waaaaaaay less insulin than ever before and seems to be improving insulin sensitivity already! She has had to change the sensitivity level on the pump twice so far to prevent over correction. When she was on the pump years ago, she could only get barely 2 days from the 300 units it would hold. She just wore it for 5 days before it got low. But, you can really only wear it 3 days without creating scar tissue, so she needs to put less insulin in the reservoir now.
So she's still waiting out the edema and body healing to lose the 20 pounds she gained in 3 days, but she's already seeing the benefits to low carb and has a strong commitment to doing what's right for her body even if it means she has to seemingly take a temporary step back. She's very fixated on her weight in the unhealthy way we are all too familiar with. Yesterday she even opened up to me about some of the emotional roots she feels attributed to becoming that way. She's not super forthcoming with talking about feelings so this was huge!
I started my Keto life 9 months ago, with a lot of my motivation being that I hoped to influence her to eat less carbs because she was definitely a binger like I was, but probably worse since she was less selective about what she binged on. I wanted to do it by setting an example of how not eating that stuff didn't mean being deprived. I wanted to show that there are lots of great foods that are highly enjoyable and I sort of thought I would have to "fake it" a little... You know, like just talk it up bigger than it actually was? Boy was I wrong there! This has been the easiest and best thing I've ever done for myself. I've actually had to "tone down" how I speak about it so I don't sound like I'm exaggerating and trying to influence her!
Once again, this lifestyle has given me hope and strengthened my commitment to it by exceeding me expectations. I really didn't think I would make progress with my most stubborn child! Lol
But, she's seeing the light and healing physically and emotionally.
Thanks again to everyone for your support, help and well wishes.
Sorry this got so long. But there's too much words in my head and they have to go somewhere.

dasher602014 wrote: »

Wonderful news! Thank you for sharing and I hope everything improves for her. Sounds as if you have both been through the mill numerous times. Remember: stubborn = strong and tenacious. Very useful when heading in the right direction!

I do agree with that very much! It can be a good quality when applied on the right things.

Thanks everyone for your kindness. I appreciate it very much.